Eli's struggle

It's been a rough week.  Eli started struggling alot more....AGAIN.

We finally got the call from the Hematologist.  His hemoc doc, cardiologist, and ECHO radiologist all met.  The spot in his heart is no longer a blood clot, it is a calcified leason in the left atrium.  This is why it is growing.  He is off of the blood thinners as they will no longer help.  Hemoc is going to do a full work up in 32 days to find out if he has a long term blood clotting disorder or something underlying that has caused the blood clots or if it's simply from the port.  Now cardio is in charge as this is specificially a heart related issue at this point.  Nobody is sure quite yet what is going to happen.  He will have another ECHO in 4 weeks.  If it continues to grow that is going to be a HUGE issue as it will block the flow of blood in his heart....

The new allergy meds don't seem to be working.  Last night was one of his worst nights in I don't know how long.  He started dropping his sats at 1am.  I would rub his back vigorously and he would stay at 77 for his O2.  I ended up having to put him on O2.  He still consistently dropped his sats into the low 80's for over 4 hrs.  He was so mucusy he was having trouble breathing.  He was coughing and choking.  No position seemed to help him at all.  His heartrate was running between 175 and 194.  By this morning he was miserable.  He has slept a huge chunk of the day, and his O2 has still run low for his normal.  His HR has still been running a bit high.  I kept suctioning but it's to far down to get it.  I put a call into the doctor 1st thing this morning.  Lots of discussions with docs and nurses.  His main doctor says that his secretions are just out of control and he's not handling them well, especially at night.  The more secretions he has the more it wears him out trying to keep them under control, which means he handles them even worse.   If that makes sense.  It's an endless cycle.  His main doctor has ordered catheters to suction him and wants us to do that as often as needed.  If we can't clear it with the cath suctioning at home we need to take him to the ER.  His doc is already discussing the need to order overnight nursing to help take care of Eli at night since that is when he struggles the most.  I'm hoping it doesn't come to that. 

I'm really struggling to watch my little man struggle with things he once had no trouble doing.  I remember a day where he could curl up and nurse.  It seems like such a distant memory.  It's gone and so many other things that once were, are gone as well.  In the beginning they would tell us that each change was just temporary, that he would get past it and gain that skill back.  It's not so.  They know it and I know it.  They have stopped promising those kind of things. 

I'm scared.  I'm so very scared.  I don't know what to do.